Watch as Sunderland fans show their support for Give Us A Break campaign to save respite care at Grace House

Parents looking to save respite care for their disabled children at Grace House took their campaign to the Stadium of Light on Sunday (August 6).

As supporters made their way to the fixture against Ipswich Town, 1144 fans signed the petition for more to be done to "ensure the vital lifeline provision remains at Grace House at least until another suitable building is found or a new facility built”.  

Grace House currently provides an opportunity for both disabled children, many with severe and complex needs, and their families to benefit from weekend and overnight respite breaks at their eight bedroom facility.

The facility is located on the ground floor of Grace House and is provided in partnership with Sunderland Care and Support (SCAS), who provide the care, which is funded by Together for Children Sunderland (TfC).

However, in June parents received a letter from TfC informing them that this facility will cease to operate at Grace House from the end of November.

One of those taking part in gathering petition signatures was Amy Hassock whose son Aaron Rochester attends respite care at Grace House.

Aaron, nine, has epilepsy, ADHD and learning disabilities which mean he “needs full time adult care”.

Amy, 30, said: “We waited for two years for Aaron to get into Grace House for some respite and as a family we are going to struggle massively if this ends.

"From time to time we need a break so we can also provide some time for his younger sister, Poppy.

“It can feel quite isolating for parents in this situation and Grace House is also somewhere Aaron can go for a break and to feel better.”

Also collecting signatures was Pamela Hodgson, whose son Luke Errington, 15, is autistic has OCD, ADHD and anxiety and has been attending Grace House for the last year. 

Pamela, 49, said: “Luke has settled really well at Grace House and is enjoying his time there. It’s really improving his social skills as well as his speech and communication.

“It also gives me a break as well and means I can have a bit of a life of my own. Loads of fans going to the game have been absolutely amazing, just coming up to us and really happy to sign the petition.

“It has been great and there’s loads of support for the campaign.”

Amy added: “A lot of people seemed shocked to hear that the respite care at Grace House is closing.”

On July 27, parents took part in a protest march outside City Hall and they have also written a joint letter to their elected ward councillors.

In the letter parents stated: “Many people tell me that they understand how challenging it is to look after a child with complex needs, but how much joy it must  bring. They really don't, I'm afraid.

"No one can possibly understand the day to day struggle, 24 hours a day, seven days a week, without a day off, a night out, a holiday, a rest to sleep.

“I and other parents have been told that there is 'simply not enough money in the system'. This is unacceptable.  The Local Authority has a duty of care to provide the short break respite that my child was assessed for. 

“The excuses being made by both Grace House and Together for Children are not good enough.

“What I would like you to do as my elected councillor is go to the cabinet member for children, your council leader and Together for Children and ask them to reopen negotiations with Grace House, to come to an agreement to continue this desperately needed service.”

In a letter to parents from TfC, Chief executive Jill Colbert pledged to find “alternative provision”, including “trying to buy a building which we can modify to fit the range of needs our children”.

However, parents are concerned at the time this will take and say in the meantime they have been offered “unsuitable” respite provision including temporary foster home care and personal assistant carers coming into their own homes.

In the letter, Ms Colbert also cited being told by the charity of the need to match a higher commercial rate offered to hire the facility space and increased utility costs as the reasons behind having to end respite care services at Grace House. 

The letter to councillors went on to state: “My child needs specialised care with staff that they know. Parents like me, need this time to rest and recover from a continually uphill struggle which affects both my physical and mental health.  

“I don't need unsuitable alternatives, I need this Council to find the money and pay the rent.”

The campaign is being backed by former Sunderland City councillor Pam Mann, whose own daughter is disabled and she has previously campaigned for respite care for families in a similar position. 

Pam said: “We have come to the Sunderland AFC match to speak with supporters and get backing and more signatures for our Give Us A Break campaign petition.

“We have had over a thousand signatures and a lot of people speaking from the heart who have had a family member attend Grace House or know people who work there and they really recognise the situation we are in.

“Both Grace House and TfC say they are open to talks, but nobody is talking. Parents are still stuck in the middle with no answers.”

A statement from Sunderland City Council has again reiterated increased rental fees at Grace House as the reason behind the decision.

A spokesperson said: “Partners across Sunderland – the City Council, Together for Children and Sunderland Care and Support - are all very aware of these matters and understand how upsetting this news has been.

“The Grace House charity required us to match the cost and terms of an offer it has had from a third party for the space used in the respite service.

“This was a substantial cost increase and a loss of the soft play area that our children used while having a short break at Grace House.

“While unable to reach an agreement with the charity about the terms it set out for a new lease, we are paying an increased rent for the time we’ve been allowed to stay in the building which comes to an end in November.

“We have always remained open to a continuing conversation about a new agreement.

“We continue to consult and consider new alternatives and proposals.”

A spokesperson for Grace House responded: “We understand the families' concerns and the importance of short breaks for families. We support their calls for a transition to a new provision to be as smooth as possible."

A previous statement from Grace House added: “Earlier this year we were informed that SCAS would no longer be providing that service.  We are not a part of the planning for the future of that service, but we understand the importance of it for families.

“Recently we have met with a number of parents to discuss this change and would continue to encourage those who have been affected by this change to contact us at [email protected] to book a meeting.”